Societi is a young organisation but in a short time, we have already made a measurable positive impact for children affected by Kawasaki Disease. However, there is much more that needs to be done. We are actively seeking urgently needed investment so we can grow and accelerate our impact.
For too long, the treatment and care of children in the UK has been hampered by gaps in knowledge and understanding, limited investment, poor levels of awareness of Kawasaki Disease and limited clinical expertise, except in just a few locations.
We have set out eight priorities and key activities – all of which would be accelerated substantially with support and investment. These are:
1. Every doctor to know Kawasaki Disease
Hospital doctors still routinely fail to recognise Kawasaki Disease and the medical emergency that it presents. In partnership with RCGP we have developed an E-Learning course for clinicians (diagnosis and acute management) which, is now available to over 100,000 clinicians UK wide. Additional capacity and investment to engage clinicians (e.g. Primary Care pack for distribution) will enable us to significantly expedite our work so all clinicians know Kawasaki Disease and expect to see it.
2. Strategic partnerships – children’s hospitals
Societi Foundation is delighted to announce the start of a three-year children’s hospital partnership programme – thanks to the generous investment and support from the Randal Charitable Foundation. Find out more about the children’s hospital partnership programme and the Randal Charitable Foundation here.
3. An engaged adult cardiology community
We need dedicated capacity which we can commit to working with the UK cardiology community. This clinical leadership is crucial if we are to safeguard those with heart damage who need long term care – as they face much higher, lifelong risks of major cardiac problems.
4. A Registry for Kawasaki Disease
A Registry is urgently needed to underpin future research, grow awareness, assist communication with patients and critically, build knowledge here in the UK.
5. UK led research
There is a rapidly rising population of those affected by Kawasaki Disease – a population which faces significant risks, and with a lack of UK research, these risks are not quantified or managed. Kawasaki Disease needs the same public investment in UK led research as other childhood illnesses to protect children’s hearts from the devastating consequences of this serious disease.
6. Raising awareness
Building knowledge of Kawasaki Disease with clinicians is critical. We aim to grow awareness with the public too – as only when Kawasaki Disease is commonly known, will children have the very best chances of early diagnosis, early treatment and a strong recovery. Our ability to reach more people rests on expanded organisational capacity to develop new programmes and capital to invest in the delivery of these.
7. Support for UK families
Having a child affected by a serious, life threatening disease that can leave a lifelong legacy of heart damage is a traumatic experience that up to one thousand families a year affected by Kawasaki Disease face. Investment will mean Societi can provide specialist, professional support on an individual basis – including a dedicated helpline with access to a trained counsellor with knowledge of Kawasaki Disease.
8. Organisational capacity
If we are to prevent heart damage in thousands more children, we need dedicated funds to support and increase our core staff team to actively drive progress sustainably and consistently.